Karen Martin

This is a little more at the other end of the spectrum since my question involves needing a much higher rate of oxygen.  I currently need 15lpm when I exert myself.  I have had people tell me that is “a LOT of oxygen.”  I suppose that it is, but it is what it takes to let me get around.  At rest I can manage on 2lpm continuous flow, but when I get…[Read more]

Judy, the funny thing about having IPF is that  there are lots of times I wish for people to want to be with me or be in touch and then, just as often, I want them all to go away. I don’t think that is awful!  I think it is just our way of dealing with the adjustments we have to make.  Tired is a large part of this for me as well.  I saw my fam…[Read more]

Joy, I understand your husband’s preference for the DPI.  It is far less complicated and time-consuming than the nebulizer.  I have to  admit that I still feel resentful at having to always be aware of the  time and taking medicines.  Horrible attitude to have, but I  do.

SOB is also linked to accumulated CO2 in your body.  This is usually the case where COPD or emphysema is involved. That may not cause your O2 levels to look particularly low.  If you need your pulse-ox to tell you that you are SOB, be thankful.  I have progressed to the stage that much activity causes my O2 to drop into the 70s or even the 60s if…[Read more]

I have been on Tyvaso DPI for five months now.   Before that I was using the nebulizer form.  I also find that the first thing in the morning, both of these forms cause a good deal of coughing and fatigue.  My O2 drops due to all the coughing, so sitting down is the best thing for me to do.  I have found that excessive coughing often responds to a…[Read more]

Sunscreen with high SPF is important when startin Esbriet.  It was suggested that I use SPF of 50 or higher.  One day early on I hadn’t put any on and was talking to a neighbor in the sun for about 10-15 minutes and I could feel my skin begin to tingle.  I was careful after that but found that about six months later it wasn’t a problem for me…[Read more]

Hey, Charlene.  I’m dealing with the same issue as you, becoming SOB with exertion.  Levels are falling into the 60’s and 70’s.  I rebound quickly, but it is terrifying!  I’m glad to get this topic in discussion and appreciate Margaret’s sharing her information.  Looks as if I will be starting on some of those exercises myself.  I hope you will…[Read more]

Charlene, I suspect the doctor would be more likely to offer other patients Ted’s information than the other way around.  That way they could make the contact without any problem with confidentiality.  Or maybe Ted could ask the doctor if he could print up a handout that the doctor would leave in the waiting room for patients to pick up if they a…[Read more]

I was also diagnosed in early 2018.  Other than progression of SOB, things weren’t too bad.  Then I ended up in the hospital on September 3rd, staying for five days.  They seem to think it was mild/early phneumonia that I had.  I had been afraid it was COVID.  The doctor asked me if I have seen my films, which I have.  He suggested I talk to my fa…[Read more]

Martha, I’m so sorry you are dealing with all of this at the same time and are so scared.  It is a scary diagnosis that I also have.  There are medications that can help to slow the progression of any scarring in the lungs and there are programs to help pay for them.  I hope you are seeing a pulmonologist that you like and trust.  Please go to him…[Read more]

Sadly, I have been told by my pulmonlogist that the only way you can really decrease your need for supplemental O2 through PT is if you are pretty out of shape to start with.  Otherwise, there is no “curing” the need for O2.  I have recently been through a course of monitored PT and even though my stamina is better than it was and I can work for l…[Read more]

Natalie, there is so much solid information here.  Pete is exactly right about the difference in pulse and continuous flow O2.  Of course we should follow our doctor’s orders, but they also need to be in-the-know about these things, too.  Outdoor humidity as well as temps affect breathing, without a doubt.  I am also not “consistent” in my bre…[Read more]

Even though I realize IPF is considered a disability, I guess I don’t think of myself as disabled most of the time.  Being almost 72, I have been retired long enough not to always feel the need to maintain the pace I used to.  Growing up, my two brothers were developmentally delayed, so “disabled” was a word I heard often, but they were just b…[Read more]

I hear that, Thomas!  I was diagnosed 3 1/2 years ago and also take a couple of other meds that are supposed to be linked to weight loss.  I know this is not an ideal way to lose weight, but it was a bright spot.  🙂  One day.

Jerry, I’m wondering if taking your restless legs meds at night might be more effective.  Perhaps their greatest efficacy has worn off by bedtime.  Just a thought.

Ladies, I also have leg, foot, hand as well as rib cramps.  I have found that drinking 6 ounces of tonic water will help.  I also take potassium in addition to the magnesium, which also seems to help.  Staying hydrated is very important.  The most helpful item I have found is a little pill called Restful Legs.  I get it at Walmart.  You place…[Read more]

You are very welcome, Pamela.  I certainly have my share of panic when I am short of breath and have to remind myself of these things.  I hope they will help you.

The most help I get for dyspnea is through pursed lip breathing and visualization.  You need to breath from your belly, not the upper lungs as we do when gasping for breath.  Breathe in slowly through your nose as your belly expands and out through pursed lips.  It is best to do this when sitting with a very upright posture.  As you calm down and…[Read more]

I was just offered the generic form of Esbriet with my most recent refill.  I do qualify for assistance, but I will happily take the generic form for two reasons.  Number 1, I have always found generics work just fine for me.  Number 2, even though the cost is not a huge difference yet, any extra dollars this makes available for others to re…[Read more]

Everyone needs time to take in this diagnosis, even your children.  I am in the camp that says tell them ASAP.   I’m also old enough to remember Sargeant Friday’s “Just the facts, ma’am.”  As was pointed out, they can (and very likely will!) seek out details on their own.  Each one has the opportunity to do that at their own speed and comfort leve…[Read more]